Chapter Six

              Ron arrived at the hospital shortly after my parents left.  His tie hung loosely around his neck.  His red eyes told me he had been crying during his hour-and-a-half trip.

              The three of us left the room to find a quiet area and privacy.  Ron cradled Kari in his arms and kissed her pudgy cheeks.  Her dark eyes twinkled, but her gaze focused beyond her daddy's face.  I knew she did not comprehend his sorrow.  Somehow her devastating prognosis was not as frightening when the three of us were together.

              An hour later a young resident walked into our room and introduced himself.  "Mr. and Mrs. Denlinger, the doctor is in a meeting now, but he wanted me to inform you that he had a more experienced radiologist read your daughter's CAT scan.  His interpretation of it is that it's normal for a child of Kari's age.  We are sorry for this confusion.  We plan to do further studies tomorrow.  I hope you understand."

              Understand?  No, but, for the moment, that didn't matter.  We were ecstatic!  Kari's death sentence was lifted!  We wondered how two reports could be so opposite, but we had our daughter back.  She was going to live!  The abnormal EEG results indicated a "grave" condition, but it was not so serious that she would die before her first birthday.

              Before Ron left for home, we bowed our heads over our sleeping daughter and whispered a prayer of gratitude.  I walked with Ron to the elevator, hating to see him go.  "I'll call you tomorrow when I learn what the 'further studies' are about. No discovery can be worse than the incorrect report we were given today."  The elevator door closed between us.

              The next morning a nurse walked into the room while I was bathing Kari.  "Mrs. Denlinger, you and your husband must learn how to give Kari her daily injection.  Why don't we begin the instructions today?"  She pulled out an orange and a syringe with a long, fat needle.

              The medication that Kari received came in the form of a thick gel.  It was administered by being injected deep into her leg muscle through a hypodermic needle.  This steroid, ACTH, was commonly used as the first treatment of Infantile Spasms, the seizure disorder diagnosed on her EEG.  She received the injection each morning and, although I did not like her having to go through this, the medication seemed to be working.  Kari was no longer having seizures, at least none that we could see.  She was much more content and eating well.

              I had not been aware that ACTH was going to be continued long-term or that I was going to have give it at home.  It didn't matter.  The thought of Kari being home again was incentive enough to be willing to give this injection to my daughter.

              The nurse carefully demonstrated the drawing up of the practice saline into the syringe, skillfully injecting it into the orange.  She then handed me the bottle, syringe, and orange.  Without hesitation, I repeated the entire procedure exactly and handed them back to her.  When she showed amazement at my mastering this activity after only one attempt, I felt compelled to inform her that I had been an intensive-care nurse before Kari was born.  Giving an injection was second nature to me, but I was having a tough time with the thought of giving it to my own baby.

              After learning that I, too, was a nurse, she walked out of the room and returned with the ACTH. "Today you are going to give Kari her injection."  I sighed.  Why did I tell her?  The nurse held Kari firmly while I rubbed her plump thigh with alcohol and cautiously injected the thick needle deep into her muscle.  Kari screamed. I cried.  The nurse assured both of us that we had done a great job.

              Later that morning, a team of geneticists walked into the room.  They explained that they were being consulted to do "further studies."  Surrounding Kari's bed, they examined every inch of her body, and took measurements.  With an ultraviolet light, they looked for birthmarks.  They questioned me about every detail of my pregnancy and Kari's birth.

              Following this thorough examination, I went to meet with the genetic counselor.  I spent the next two hours answering more questions, especially about our family medical history. Our ethnic background was of particular interest.  Because Ron and I were raised in a Mennonite community, the geneticist was concentrating his efforts on several conditions known among our ethnic group.  The doctor seemed hopeful that he could diagnose Kari's condition and proceed with the proper treatment.  She would receive the "work-up," his term for blood and urine tests, for these genetic possibilities.  Ron and I also needed to have DNA testing completed.  I left his office feeling drained.

              When I returned to Kari, her arms where covered with Band-Aids, more blood had been drawn while I was out.  She was sleeping with tears still on her face; her gown and sheets disheveled.  I gently picked her up and rocked her.  She woke for a few moments, but her warm body soon went limp as she nestled her head into my neck and went back to sleep.

              My distressing thoughts would not allow my exhausted body to relax.  The doctors seemed so excited to learn that both my husband and I were Mennonite.  For the first time they were expressing hope in discovering a diagnosis for Kari.  I squirmed uncomfortably in my chair.  Were they blaming me for the sickness in my daughter?

              I had married the wrong person.  It was because of our union that this little girl had to suffer.  Why did God unite Ron and me together if He knew that our child would not be healthy?  I loved Ron but now I also felt selfish.  My happy marriage was the reason my daughter is suffering.

              Ron appeared in the doorway.  I had forgotten what time it was and had never called him.  The day had been busy.  Emotionally, I was a wreck.  He bent down to hug me, but I resisted him.  Any other time, I would have been overjoyed to see him, but horrible thoughts and questions were dominating me.  I had been wrong for loving him.

              He followed my cue and backed away.  Instead, he handed me a newspaper and quietly said, "Joan there is something in here for you."  I opened it to the section he had marked, and found a segment devoted to Valentine messages.  I had forgotten it was Valentine's Day.  A message stood out highlighted in yellow.  It read, "Joan and Kari, it's easy to see, that you're both very special and perfect to me!  Your husband and dad."

              I closed the paper and began to cry.  Ron had written that, knowing something was less than perfect with Kari.  We hugged each other and shared a Valentine kiss.  I knew that even if Kari's problem was genetic, Ron was right.  Kari was perfect.  God had not made a mistake by bringing Ron and me together.  All the doubts I experienced earlier that day mysteriously vanished at that moment.  This was God's perfect plan for us.  He knew we would need the ample love we had for each other to provide a secure and loving home for Kari.

              "Ron, today they told me Kari may have a genetic condition and they also confirmed that she is cortically blind.  She can't see, Ron, but I do believe that God created her perfect in His eyes.  That is the way I always want to see her."  I continued, my confidence rising. "She hasn't developed since the day she was born.  I loved her then and no diagnosis, no matter how devastating, will change my opinion of her.  She needs us to stick together as a family and I know we will."

* * * * * * * * * *

Ron's Reflections...

              What a traumatic experience it was to have that CT Scan misread.  We’ve told that story to many and their response is usually one of horror and anger that doctors would so callously pronounce such a sentence on our child without knowing for sure that it is true.  Friends have regarded it as some kind of malpractice and expressed their feeling that doctors like that should be put in their place.  I understand their sentiments.  At the same time I’ve thanked God over and over again for that incident.  Here’s why.

              In a very short time we went from believing we had a normal child, to hearing our daughter’s condition was quite serious.  Things were spiraling downward fast.  Everything kept being taken away from us.  We had nothing left, at least that was what we thought.

              And then came the news that Kari would not die within a year.  Whatever it was she was facing was not immediately fatal.  We realized that we still had Kari.  Gratitude for that washed over me.

              My thoughts went back to the day in which she was born.  There in the delivery room I was asked what I’ve often considered to be one of the stupidest questions ever asked of me: “Would you like to hold your daughter?”  Would I like to hold my daughter?  What kind of question was that?  Of course I wanted to hold my daughter!  It was an unbelievable wonder to be able to hold a little baby and know that I was now a father! 

              That evening at CHOP, after receiving a brighter picture, it was as though my daughter came into my life once more.  I picked her up and held her.  I remembered how privileged I was to have her and to be able to love her.

              That false diagnosis (with its subsequent retraction) impacted me in other ways.  I realized how much I had been assuming that all would go well, that our daughter would be normal.  I almost expected it in the sense that it was owed me, that one should be surprised when something goes wrong.  My eyes began to be opened.  The more time I spent in CHOP, the more suffering I saw.  I can picture one little boy walking the halls, pulling along his IV pole.  The lack of hair on his head made me realize the solution flowing into his veins was chemotherapy.  The more I began to see all the things that can go wrong, the more I realized how surprised and grateful we should be when a little baby is born without any maladies.

              A doctor’s diagnosis changes nothing.  It merely expresses what he believes the situation to be.  When we were told she would die in less than a year, the words didn’t make it so.  When it was told us that she would now live, there was no sudden rush of health into her body.  The diagnoses changed nothing, and yet they changed everything for me.  I went from seeing nothing for which to be thankful, to being grateful.  I would always need that perspective. 

A successful family focuses on evidences of God's goodness.

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Copyright (c) 2002 by Ron and Joan Denlinger